Hi ladies, not sure if this thread is still active but it’s been lovely reading all of this knowing I’m not alone! 
I have recently been diagnosed APSN, I’m only 28 and absolutely heartbroken with the thought of needing a hysterectomy. They have said I can be monitored for the next 10 years or have a hysterectomy and I’m really torn. But I’m not sure I could live with this anxiety for the next 10 years! My daughter is 3 and a half, I had a manual removal of placenta in theatres after her birth so I believe that may have caused this issue. And I’m worried that it’s been in there for almost 4 years already! My symptoms are like a constant “dull/toothache” kind of pain and I’ve had non stop heavy bleeding since my daughter was born, as well as painful/bleeding after intercourse. My GP kept fobbing me off until I was finally seen in June (3 years after symptoms started) and that’s when they found this abnormal area after a laparoscopy had hysteroscopy and it’s taken until now, almost 7 months since the procedure to give me the diagnosis of APSN (there was a delay from my local hospital sending it to the trophoblastic disease centre) 

Those of you that had a hysterectomy young, how was that? How are you doing now? I’m so worried about future health issues from having a hysterectomy young. 

I have just received the news that I also have aspn too. I’m awaiting my referral letter for my first appointment at charring cross. The thought of being monitored for 10 years is crippling to my anxiety. When all my issues started I begged my doctor for a hysterectomy which was refused due to my age (32). I have my two miracle boys, one of which has ASD so I have my hands full and do not wish to have any more children. Do charring cross give you an option for a hysterectomy? I just want my nightmare to be over. So glad I found this forum to know it has been one of the most settling pieces I have found because as we all know it is extremely rare and there doesn’t seem to be much out there! 

Thank you so much ️

I was just reading back on this whole thread. Someone mentioned that they had retained placenta. I too had this issue! Just wanted to document it here for anyone else reading this thread. Maybe it was the retained placenta that caused this and not ivf meds? I had a 2nd trimester loss due to trisomy 21. After the miscarriage my placenta was retained so they had to remove it manually in theatre. They didn't get it all out!  I learned this as i had 3 failed embryo transfers which led to a hysteroscopy for investigation. Fragments of the retained placenta were then found. They said these fragments were preventing a successful implantation. They removed the fragments but also sent me for a D&C just to make sure they got it all out. It was then that the Nodule was found. It was found very coincidentally.  The Nodule was then sent for testing and came back as ASPN. Just said I would document this info here this seen as this is so rare.

My placenta ruptured together with too much blood loss and uterus split. I asked this very question, could it be placenta was retained and I was told no because left over placenta tissue would normal just die off but you now saying about part of the placenta being retained makes more sense given mine ruptured. The consultant team didn’t have many answers as it’s so rare. Be interesting to know how many people in UK have had this very issue and whether it is linked to IVF or ruptured placenta or just one of those rare things. 

My placental tissue remained inside with absolutely no symptoms whatsoever (bar not being able to get pregnant again!) Once they removed everything i got pregnant straightaway. Yes because yours ruptured you would definately wonder could fragments of placenta have been left behind! Very possible. I would logically wonder the same.. I'm surprised they're not trying to "study us" more and investigate the common links between all of our stories are seen as this is so rare 

I had my placenta “surgically removed in theatre” after it was stuck and I haemorrhaged very badly (3litres!) and yet somehow 4 years down the line with the most horrific periods and pain, I was found to have an ASPN, I’m now 28 with a full hysterectomy (bar ovaries luckily!) I was also surprised that they didn’t want to study more into it and was shocked that as soon as I had my hysterectomy I was discharged and never contacted again! From being contacted once a week to nothing is very strange. It’s all very surreal as it happened so fast! From diagnosis to hysterectomy was around 10 weeks. I’m now 10 weeks post op :) 

When I asked if there are any links with IVF they said they’ve never looked into it but perhaps they should going forward. I feel we can’t be the minority and have so little woman with this. I do think a lot is passed off as menopause symptoms or just the way your body is and alot just carry on without investigation. Those who don’t get symptoms - how many woman are actually out there with APSN. 

I also had horrendous periods 24/7 and heavy. Pill and depo masked it but nurse encouraged I be on them to control the bleeding. So despite my traumatic birth I feel I was fobbed off. I have copies of my GP notes and I am going to write a letter when I’m ready to do because i feel now that nurse should have referred me to the GP. Hysteractomy would have been treatment for me but it would have saved years of pain. 

Hi ladies really need some advice I've joined the FB group I'm hoping I can reach out to one of you regarding apsn xx

Hi there , hope you're doing ok. I'm online right now if you'd like to talk. 

Heya - what is the FB group called? 

Heya - what is the FB group called? 

Atypical placental site nodule support xxx